Tuesday, 07 January 2014

The New Way of Talking About Death and Dying

PERSONAL NOTE:I was overwhelmed yesterday when I returned home from a meeting in the late morning to a huge number of emails from readers asking if I was all right - there was no new story posted nor email sent - and the messages kept coming during the day.

It was entirely my mistake. I always set the next day's post to publish at 5:30AM Pacific Time and the email usually goes out within two hours. But I had accidentally set the publish time to 5:30PM so no email was sent until many hours later.

I am deeply touched by the concern of so many of you. What a bunch of wonderful, caring readers I have.

Death Cafe. You could say the idea has been sweeping not just one country, but the world. Death Cafes began in Switzerland in 2004 and gained momentum when the first one in England was held in 2011.

There now are regularly scheduled Death Cafes there, in Europe, North America, Australia and Asia.

So what's a death cafe? you may ask. For the sake of succinctness, I'll let the folks at deathcafe.com (of course, you knew there is a website) explain in their simplest terms:

At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death. The objective of Death Cafe is to increase awareness of death with a view to helping people make the most of their (finite) lives.”

Death is hard to talk about. Most people find it too morbid to take part in such a discussion and many elders find that when they try to talk about details surrounding their eventual demise, family members refuse to listen, brushing it off with some such platitude as, “Oh, you've got many years left.”

Yeah, maybe so. And maybe not. It is frustrating when younger relatives refuse to engage. But it's not just the practicalities of death and dying as we get closer to our demise. Everyone, young and old, religious and atheist, fearful and not, in their quiet moments alone ponders the mystery of death.

Jon Underwood, the man who is said to have held that first 2011 Death Cafe in England told The New York Times that he envisioned Death Cafe as

“...a space where people can discuss death and find meaning and reflect on what’s important and ask profound questions.”

As it happens, I went to a Death Cafe for the first time in early December. It was well attended, 35 or 40 people scattered among seven or eight round tables, and formally facilitated by a professional “life cycle celebrant” - whatever that is.

If you're a regular at this blog, you can easily guess that I didn't sign up without having thoroughly researched Death Cafes both online and off in-personal conversations with people familiar with them.

"'This isn't therapy. This isn't a support group'...The purpose is to get people to become comfortable talking about death, she said, not to mourn those lost or get advice on estate planning.”

Which is precisely what I had been reading around the web and was told to me by the people I spoke with. Other important elements imparted to me are also listed at the deathcafe website. The gatherings are held

”...on a not-for-profit basis...[and] with no intention of leading people to any conclusion, product or course of action.”

Maybe I'm just unlucky but that's not what happened at my Death Cafe in December.

After the six at my table introduced ourselves, the first attendee to speak went on at numbing length about how he could not decide which relative to name as a trustee of his wealth.

I thought this was a question better put to an attorney or close friend than strangers but I bit my tongue and daydreamed for the 15 or 20 minutes he continued explaining his pro and con reasoning in excruciating detail.

Even when we at last moved on to other topics, he kept circling back and that wasn't the worst.

One of the principles of Death Cafes is that attendees leave their professional credentials at the door and as just noted above, do not use the sessions to hype business interests.

But a woman with a newly-acquired, late-age college degree in some type of counseling I don't recall, used every moment she spoke to promote her new counseling service. When, during the break she was advised to stop, she came back to tell us she had been chastised, then continued during the second half of our discussion to promote her business while giving, each time, a little giggle - "oops, tee-hee I'm not supposed to say that."

It was hard to refrain from smacking her.

So, my Death Cafe was a bust. But I know from personal conversation and reports on the web that my experience is not usual.

I flatter myself that having survived, from childhood, decades of a knee-wobbling fear of death and overcome it, I don't need Death Cafes. That may or may not be so but they are, I believe, useful and worthy and an excellent way of toppling a taboo that needs it.

As we settle into the new year, I'll be looking for upcoming Death Cafes in my area and deathcafe.com has a search engine for upcoming gatherings. On the same page, organizers from around the world list details of their scheduled Death Cafes.

Given my first experience, however, next time I will ask a lot of careful questions of the organizers before I decide to attend.

Have you been to a Death Cafe? If so, what was your experience? If not, are you interested?

In addition to good information at deathcafe.com, there is a lot more that is useful and interesting elsewhere online. Just search “death cafes” and you will be rewarded with many good choices.

Comments

My husband died this past summer soon after refusing all treatment other than pain management. The most difficult person to talk to about the dying process--his medical doctors, followed by his son (who has so many of the same medical concerns and conditions). The absolute easiest person to talk to about the dying process and how I was feeling as well through this, my six year old grandson.

I will have to research Death Cafes before making a judgment of their value, but my first reaction is that they are probably useless unless you happen to get with a group that really need to talk about death and dying. The odds of this happening are probably pretty low.

I fail to see how they cannot devolve into a therapy session. Perhaps I am missing something here.

As the second person to host a Death Cafe in the U.S., I'm sorry to hear you had the experiences you detailed. In the events I facilitate, we keep the group under 20 people so everyone can participate in one discussion, wordy people can be asked to summarize, and commercial announcements can be shut down.

I would attend such a thing if one were held locally, but, alas, two such events last fall have passed. The idea sounds promising, though I am always distrustful when required to break into arbitrary "small groups."

For myself, I welcome the religious observance of Ash Wednesday ("From dust you come and to dust you will return") to reflect on death. I think of it as a sort of holiday for such meditations.

This doesn't sound like something that I would want to do. To me there is a fine line between talking about a topic such as death and dwelling on it. Talking about legal topics, as Ronni pointed out, should be left to experts. What is left? Religious beliefs? Philosophy? People have different needs; talking about death is one that I don't have. If it helps some people, I'm all for it.

I also attended a Death Cafe in NY this fall and was, like you, totally disappointed. I am a senior and I work with seniors and I am very interested in end of life issues. As a facilitator myself, I felt that the absolute lack of any facilitation was responsible for the lack of any real direction for the conversation at my table. A colleague also attended and felt the same way. So my experience at Death Cafe was a bust also.

What an interesting concept. One I have practiced myself previously with a female friend who worked on a Howard Dean Meetup group years back. We would meet about once a month at a coffee shop on the town square and discuss both life and death issues. She had been diagnosed with liver cancer and I think if no action was taken might have a year left.

We talked and I mostly listened to her views on the after life and getting on a list for a transplant. It was enormously interesting and allowed us both to talk unabashedly about end of life plans.

I hope these death cafes turn out to be something like my friend and I engaged in and not opportunities for free-marketers to hawk their services.

In Minnesota there is a group called the Minnesota Threshold network. They notify members when there are Death Cafes around the state and mostly in the Twin Cities. Minnesota passed a law a few years ago that enables people to do their own funerals at home without the assistance of a funeral director. The Threshold network is available for consultation and help in this process. I have not been to a Death Cafe as I was a mortician for 25 years and have spent many years wrapped up in the topic, however, some day I will gird my loins and go to one...I am curious!...It will also take some warmer weather -35 at my home this morning.....

I am different from my parents and grandparents who never would talk about death.
My children say I talk to much about it lately.
But it is a fact, we live and we die. So I have tried to approach my many mistakes and ask forgiveness of them and myself. I am ready but truly would like some more quality years just to witness my
grandchildren's lives - they are all so talented.
A meeting like you shared about
would not interest me.
We have no guarantee of what is left for us. Everything changes in the wink of an eye.

I live in an area populated by people over 75 and find that they are the ones who refuse to discuss illness and dying not me at 53. They basically avoid the topic, go into denial mode and change the subject. They also act like that even when somebody is dying in a hospital bed, won't even go near the person. I sat beside my neighbour in palliative care for 3 weeks while her husband stayed at the foot of the bed reading a book. She refused to sign a will at 89.

None of them wanted the link to the online Alzheimer's testing, just don't want to know about it. Sorry, boomers are much more open to the subject than the elderly are.

The heck with Death cafe's. The best way to come face to face with one's demise is to pre-arrange a funeral for yourself. Pick out your own casket and what kind of service you would like, then write a check for the whole thing. Funeral directors deal with the inevitability of death everyday in a realistic and sensitive manner. And, you are right. Legal matters should be discussed with an attorney and not a bunch of emotional strangers more intent on relieving their own concerns than yours.

I have coffee at the Death Cafe quite often and it is right in my own kitchen with me, myself and I. The topics covered are whether or not my spouse and I have all our end-of-life issues properly covered and will my body disposal be handled in the least expensive way possible as was his and with the least hassle for the children. There is really nothing else to ponder with anyone else because their guess on other issues is a good as mine.

I think it is important for people to learn to face death since it is the wrapping up of life. The candles on the cake of celebration. We live too often dreading death and it effects our everyday life. Just look at Woody Allen. :0
However, as a couple of commenters pointed out, it seems death cafes would be best off with facilitators, especially since most people really do not want to talk about death.
Meanwhile, I wonder if there is one going on this weekend. jk

I saw a notice of one in my area. Not sure how I feel about them, but was so happy to have the opportunity last year to really talk with my children about the topic that they previously didn't want to talk about--my death.I do think and talk about death a lot, both because I am approaching an age when all my ancestors died, but mostly because I have come so close myself numerous times in the last year-and-a-half.In a way, those experiences took away fear of death, but, at the same time, that first stretch of moving down the tunnel was horribly uncomfortable when my heart stopped, and I hope not to ever feel that again.

We were awkward in the beginning, back in the day when we stumbled around trying to find the vocabulary to disrobe the shrouds sex was disguised in. So it is now when we talk about death and what it means in regards to the scope of our lives. There are a lot of unspoken thoughts that become confusing in the throws of reality when death makes a call. There are very real actions and choices and sufferings that, upon reflection, could have been avoided if we had found a way to talk about these things before hand. Just like learning how to talk about sex liberated ways to bring the sanctity of life back into the birthing process, so can learning to face our expiry dates and talking about death allow our departures to be more accepted and even celebrated as full lives lived well to the very end. We've a long way to go to make death and dying line up with the richness of our lives. We need to talk and it will be weird until we find our stride.

i don't like the name of the group. the 2 words don't seem to go well together somehow. i wouldn't want to be trapped in a room listening to discussions to which i don't relate. i am active in care2 online which used to have a lot of good groups and one on the subject of dying with all that entails might be better than a real life group. one could pick the threads and read and respond to what would be meaningful to the individual.
there are many aspects to the topic like the philisophical/ religious...what happens when we die to how you want the more worldly things taken care of.
i think and talk about it all. i have my trust/living will taken care of, but haven't taken care of leaving my body to science. donating organs is on my state id card. i want to let my daughter know what i would like done, but want her to be comfortable with it. so i try to talk to her and one time she asked me if i just sit around thinking about death all the time. i had a friend die unexpectedly and her 2 sons had no idea what she wanted and had some difficult decisions to make. i'd like to put some things in writing, but i am such a procrastinator. i think it is good to talk about it in a comfortable, matter of fact way as death IS a part of life and it will happen to us all. none of us really knows what comes next, but i want to be comfortable with it and want my friends and relatives to know i am. maybe the worst thing would be that there is nothing, but it was a good ride while it lasted!
oh, and i want a party for my memorial service!

just looked for active death groups on care2 and though several have been started, none are being posted on. i was for a short time in a group about concerns of elder, but left when it's scope remained too narrow and hardly anyone was posting. i find many of the topics here very interesting and think a forum type group to discuss them would be useful.

Good going, Ronnie!
When I took all my classes on Social Gerontology, (after I became an RN), I found the most life changing semester was when we studied Death and Dying. I DID NOT WANT TO STUDY THAT AND LEARN HOW TO HELP PEOPLE DIE!! What a shocker to hear the professor say on day one: "Oh, this is not about other people dying...this is about YOU dying!"
Death is like the sun, we cannot look at it straight on because it burns too bright. We look at it out of the corner of our eyes. As a student I was required to draw a picture of myself dead, to write my obituary, to do a dispersal of personal property list. One whole session was on us having to think about a world where everybody else dies but YOU! By the end of that we were all standing in line to die!! We don't want to die today, not today, but please DO NOT LEAVE US BEHIND!
Standing on a scaffold looking into the abyss out of the corner of my eye, it became more and more "less frightening" and less of an abyss. I brought many things out of those classes, but the best thing I brought out was an increased ability to live in the present....today is all we have no matter what our age.
Not too many years ago, people were surrounded by the dying and death was not an insult, not hidden and was part and parcel of life, but now the dying are hidden away as they die. We need those Death Cafe's, I'd say...and they are aptly named. If we say the word old often enough we become comfortable with "old". If we say the word death often enough, we will become more comfortable with "death".
Keep us posted, Ronnie, on future experiences at the Cafe's.